“Life is pleasant. Death is peaceful. It’s the transition that’s troublesome.” ~Isaac Asimov
Let’s face it, transitions suck. And I thought we were done.
I guess there is a reason they call it “Children’s” hospital. Yes, we are aged out. Well, kind of.
Pearlsky’s doctors are letting us know that the time has come to transition (there’s that word again) to the adult medical care in the area. Some of the doctors do have patients into their 30’s, but in general, once a patient enters his or her 20’s, it is time to move on.
In some cases we have been with these doctors for 22 years. Two of them have known Pearlsky all her life. The shortest relationship is probably 10 years. And I know you won’t believe this, but really, Single Dad is picky about doctors. Yep, really. I have smiled, and wheeled Pearlsky out of doctor appointments after a few minutes. All of her doctors are hand picked by either me, or other doctors who know Pearlsky (ok, who know her dad) and came highly recommended (and prepared). These are incredible doctors, incredible people who we get along with fantastically. Who have seen Pearlsky nearly dead, seen her dad at his worst, who have been there for us. Doctor’s who were in on the diagnosis of a metabolic disorder never before described.
And now they are kicking us to the street. Ok, no, they are not. It is simple abandonment. Well, no.
We are looking for new doctors over the next year. They have recommended a woman doctor in an affiliated hospital who “gets it” and would be a good match. We will check her out, she is an internist and we will need a small team in addition. I think we can get away with an internist, neurologist, GI, and a gynocologist. If you remember, we do have a fantastic GYN, we went once and need to make another appointment now.
This is harder than I thought. Do transitions ever end?
Bless you and your diligence, single dad. Pearlsky is so lucky to have you and I am pretty sure you, her. I just lost my husband a month ago. I don’t say this for sympathy. I say it for transition understanding. I get it and I know your process is painful and difficult and frustrating. I also have two grandsons who both happen to have Down Syndrome, so I get the finding great therapists and doctors. I’m also a special ed and reg ed teacher who has taught many types of children. They are ALL great but all have to go through transitions, some even just to go to lunch. Hang in there and continue to be Pearlsky daddy and advocate. You Rock!
Transitions never end. Life is a continuum. You can blame time for this one. Stuff is always changing, always rearranging itself and the idea that we’ve “arrived” anywhere for any amount of time is, basically, an illusion. It’s actually quite exciting — when it’s not frustrating and scary! Theoretically, I feel the only thing to do is embrace the changing nature of it all and go with it to the best of our ability.
Good luck finding the best team possible for Pearlsky, the adult! You did a great job for Pearlsky the child, so you obviously know how this works.
You are different. Don’t get me wrong, I think it’s great, but reading today’s post…your tone. Optimism? Determination that no matter what as you move along each Boulder will simply be lept over as easily as, say, Donkey Kong?
The advocacy role suits you. I hope you are able to write more about that at some point. I’d love to see how you changed careers (though you’ve done it before many times) seemingly effortlessly. I know I have rose colored glasses on but still I could use the look-see. I have changes I have to make and you’re one of the few role models I’ve got.
No pressure. 😉
Pat yourself, you deserve it! I am glad I found your post. My son is 31 and I have provided care and his advocacy throughout his life. As we age it gets harder ……….. everything is harder after I got hit with some medical problems. My son is #1 and I was able to manage society regarding his needs effectively…….however as I age I find we didn’t have a slew of friends…..probably because I was juggling my son, home, work………etc., so we are someone homebodies as I get pretty tired juggling W/C ………… it saddens me we get few visitors and always expected to go to them…….. Well, keep up the good work being #1 dad and remember those that do not live it really do not know what the parent/parents/person experiences……. :-0)